Earlier this month, I told the CFS Advisory Committee to keep track and keep asking about how DHHS was responding to its recommendations. I discussed four recommendations in detail, including:
Regarding your recommendation that HHS engage the expertise of the CFSAC to advance policy and agency responses to ME/CFS, the December 2011 progress chart stated that several members helped plan the SoK meeting and review the CDC website. It’s better than nothing, I will admit, but I don’t believe that meeting planning and website content review is where you can add the most value to the policy and agency responses to ME/CFS.
Turns out, I should have read the fine print. In preparing my testimony, I relied on the CFSAC Recommendations Progress Chart (pdf) for the text of all the recommendations. But it turns out that the chart is incomplete. The actual text of the motion passed by the Committee at its October 2010 meeting* is:
HHS leadership should engage the expertise of the CFSAC as it moves forward in developing policy and agency responses to the health crisis that is ME/CFS. Using experts as consultants early in the process in this exciting time of dramatic health care reform and policy change will bring rapid progress and promote a more effective HHS response on behalf of this underserved and very ill population. Pressing needs such as coordination of the federal research agenda and addressing agency response to the issues of access to care, provider and community education, fair access to disability benefits, and rapid testing and approval of effective treatments need to be a priority as the agency redefines its goals. [emphasis added]
The Committee was very clear on how it wanted its expertise to be used by DHHS. I was correct in my belief that meeting planning and reviewing the CDC website were not the places where the Committee could add the most value. The Committee clearly contemplated a more substantive role, including coordination of the federal research agenda. If I had read the actual recommendation, instead of relying on the chart, I could have noted this in my public comments.
This is just one example of inaccuracies that I have found in the Recommendations Progress Chart. I’ll be posting more about the Chart in the coming weeks.
*The CFSAC website does not have this text in the recommendations from October 2010 or in the meeting minutes. However, this full text was posted immediately after the meeting by both the CFIDS Association and on Phoenix Rising, so I am confident that it was the committee’s intention.